Dr. Koven was busy bringing chairs into the room. It was going to be a long meeting because none of the other doctors or nurses brought anything to sit on when they met with us. The already small room grew smaller. The three of them launched into gathering a detailed family history as if they were writing a novel on our family genealogy rather than trying to figure out what was wrong with Rori. They took out a pencil and paper and began drawing an extensive family tree beginning with both of our great grandparents trickling all the way down to Rori.
It wasn’t as if our family tree was healthy. We’d had our share of disease and illnesses. David’s parents had both died of cancer a few years back. His side was littered with alcoholics and mental illness and he’d had a cousin who’d committed suicide when he was 22. Nearly half of the women in his family had battled breast cancer and those in the far back lineage hadn’t survived it, but most in recent years had.
My family tree wasn’t as full of illness as David’s although I had a long history of heart disease which took lots of the men as victims. I couldn’t give them much information about my father’s side because I didn’t have it. My parents had divorced when I was six years old after my father left my mother for another woman. Even though we had illnesses and disorders, there was nothing in our genes remotely related to kidneys or metabolic disorders.
They drilled us with questions, taking turns being the one to do the asking. Sometimes they asked us the same question twice just in a different way and I felt more like we were being interrogated than undergoing a medical evaluation. It was odd. I couldn’t imagine why anyone would lie about their family history. Would any parent cover up something that could possibly help their child?
Dr. Wilcox flipped through his notes. “I see that you guys did a series of IVF treatments? Did you have any type of genetic testing done?”
We did. We’d gotten genetic testing prior to starting our first round of IVF. I wanted to be one hundred percent certain there wasn’t anything medically wrong with either of us preventing us from getting pregnant before we sank so much money into IVF. I also wanted to make sure neither of has had any genetic disorders we could potentially pass on to our children.
“Dr. Keene was our fertility specialist. He was the one that completed all of the testing.” I answered.
“Did anything unusual come up on your genetic testing?”
“Not really. I mean each of us had things that were recessive, but neither of us had anything we could give to our children.” I said.
“Would you mind if we got those records from Dr. Keene? It would really help us narrow down which tests we want to do with you. I’m not sure if Dr. Koven explained this to you or not, but we’ll be drawing blood from both of you today as well as Rori. We’re going to do a full genetic panel on both of you and her. If we know the tests that you’ve already had then it will narrow the net we have to throw.” Dr. Wilcox explained.
David and I nodded. They could look at anything they needed to in order to help Rori. Dr. Hettinger handed us a release to sign for Dr. Keene and we scribbled our names on the designated lines. After our family tree, they’d shifted to gathering the most extensive and painstakingly long history of Rori’s development beginning with pregnancy. Nearly three hours had passed by the time we were finished with the evaluation. David and I breathed a sigh of relief when they finally left.
“Oh my God, that was exhausting!” he said, slouching down in his chair to lean his head on the back of it.
“Right? Totally crazy. I think we spent half an hour just describing the color and texture of her poop.”
David burst out laughing and it opened up the entire room, lifting the tension. I could breathe without feeling as if I’d choke on the air. He reached over and grabbed my hand, pulling me close to him, and looking into my eyes.
“I love you, Celeste.”
My heart swelled. I never tired of hearing him say it and never would.
“I love you, too, David.”
Chapter Eight
The next few days were excruciating. Time stood still. It felt like it did in the early days when David and I would sit by Rori’s bassinet watching her sleep. She wasn’t responding to dialysis and grew more and more unresponsive each day, slipping further and further away from us. She went through three rounds of dialysis every day and she no longer even opened her eyes when they hooked her up to the machine. She’d gone into a ketoacidotic coma. She still cried without any tears and she’d given up talking. She just moaned. She wasn’t eating and her skin had turned from yellow to a murky green.
It was the most time David and I had spent together alone since Rori had been born. We didn’t have any distractions besides the constant text messages and emails coming in from our family and friends. Our phones buzzed constantly with people asking for updates until we finally turned them off because there was nothing new to report and we got tired of tapping out the same response over and over again.
We were still waiting for the blood tests to come back because they’d been sent out to different specialized labs all over the country. Dr. Koven and Dr. Wilcox warned us she might have an autoimmune disorder that was responsible for her organ failure so Rori wasn’t allowed to have any visitors. Until they had ruled it out, they didn’t want to take the chance of exposing her already fragile system to any possible viruses other people might carry if they came to see her. Dr. Koven had given us strict instructions to monitor our own health and if we started to feel sick then we were supposed leave the hospital immediately until we felt better. She’d assured us that as hard as it would be to leave Rori, it was better for her health if we didn’t expose her. We’d both had a flu shot yesterday to be safe, but also to feel like we were doing something productive.
Despite how sick she was, I still didn’t feel anything. It was if the plug connecting me to my emotions had come undone. I tried to bring myself to feel guilty about my lack of feelings but I couldn’t feel the guilt in my heart in any kind of a real way. Instead of spending time trying to get myself to feel something I couldn’t, I focused on my feelings toward David and doing what I could do to make him feel better. Unlike me, he was an emotional wreck. He wasn’t sleeping for more than an hour at a time and it had nothing to do with our uncomfortable hospital conditions. He didn’t eat and I was pretty sure he’d lost as much weight as Rori. He was starting to resemble a tweaker with his sunken in face and constant teeth grinding. He consumed coffee by the gallon and all the baristas at the hospital Starbucks already had his order memorized.
Since Rori didn’t do anything but sleep, we had endless hours to talk to each other and it allowed us to talk about all the underlying issues going on between us. It reminded me of how things used to be and felt wonderful. We finally got the opportunity to clear the air about our awful fight.
“Babe, I’m sorry. I’m really sorry I said what I said and I know there’s been a rift between us ever since. These early years are so hard. Everybody struggles, but I promise you once we get out of here, things are going to be better,” It was the third time he’d said it since yesterday, but I liked it more every time he said it.
I laid my head on his chest, “I’m sorry too. I don’t know what’s happening half of the time. I hate fighting with you.”
He kissed the top of my head. “I know I’m different...”
It was the first time he’d admitted it. It felt good to hear him say it—validation that I wasn’t crazy. “It’s weird for me.”
“Can you believe I turned into you? God, how do you live this way?”
I burst out laughing and punched him in his arm. “It’s not so bad. You get used to it.”
“I always wanted kids. You know that. I just wasn’t prepared for this.”
“Neither was I. Any of it.”
“And certainly not this.” He motioned to Rori strapped up to all of her machines in her hospital bed.
I let out a deep sigh. “We’ll get through this. I promise you.”
&n
bsp; Later on while we were in the cafeteria staring at our plates instead of eating, he looked at me like he used to with eyes overflowing with love. “I need to do better at being there for you. We need to spend more time with just the two of us.” I beamed. I missed him so much. Was it possible this crisis would be the thing to bring him back to me? “How about once this is all over, we go away for the weekend together?”
“Like without Rori?” We hadn’t left her alone overnight with anyone since she’d been born.
“We’ll leave her with Robin and Trey. She loves them and she’s totally comfortable there. She probably won’t even notice we’re gone.”
I squeezed his hand under the table. I couldn’t imagine getting to have him all to myself for an entire weekend. “Can we lay in bed until noon, please? God, remember when we actually used to do that?”
“We can do whatever you want to do.”
He took my hand on the walk back up to her room and I had to hold myself back from skipping down the hallway. My thoughts were racing and already planning ahead to where we could go on our weekend. I knew Robin wouldn’t hesitate to watch Rori. She’d offered on numerous occasions especially since we’d watched Emma overnight for her and Trey plenty of times. David had always refused her offers saying he’d spend his time worrying about her instead of enjoying himself. I was so glad he’d changed his mind. I wondered if he meant we could go away for the entire weekend or if he’d only meant Saturday night. I wanted to rent the small cottage on the beach where we’d spent our tenth anniversary. It was one of the most romantic weekends we’d had waking up each morning with the sound of the ocean and the smell of salt wafting through our windows.
David was bummed we couldn’t have visitors but I secretly enjoyed it just being the two of us. There were also long periods of silence but even those periods were comfortable again. We could sit in silence without feeling as if we had to fill up the space. I didn’t even miss work and I always missed work.
“Are you asleep?” I whispered from my chair shortly after the two a.m. nurse check.
“I wish,” he said. “I feel like I haven’t slept in years.”
“I get jealous.” My voice came out barely audible.
“Huh? I can’t hear you.”
I cleared my throat and tried again. “I get jealous.” I felt so silly finally saying it out loud. Who got jealous of a 4 year old?
He rolled onto his side and propped himself up on his elbow. “I know.”
“You do?”
“You’ve had me all to yourself for over ten years. Now you have to share me and you don’t share very well.”
I couldn’t see his face in the dark but I didn’t need to. I knew he was smiling. “Does that make me pathetic?” I asked. “I mean, I know I shouldn’t. I know it’s stupid, but I miss you. I miss when I was the most important person in your life.”
The silence stretched out between us. Finally he spoke again. “You both are important to me. I’ll work on giving you more of my attention. I realize all of it goes to her.” His voice was kind. “Come here.”
We’d been taking turns sleeping on the cot and tonight was his night. I crawled into the cot with him that was smaller than a twin sized bed. I curled up next to him so he could spoon me from behind, wrapping his arms tightly around me. He smelled sweaty because he hadn’t showered since we’d been at the hospital and it’d been four days, but I didn’t mind. It was familiar and comforting. We managed to fall asleep together, but my last thought before nodding off was that he hadn’t said I was the most important person to him and only one person could hold that coveted spot. When it came down to it, you always had to choose. I knew Rori was supposed to be the most important to me just like she was the most important person to David, but if I had to pick between saving his life or saving hers, I had to admit I’d chose him. I also knew he couldn’t say the same about me, but I was going to have to learn how be okay in second place if I wanted our marriage to work.
A nurse I didn’t recognize came in for morning rounds. I was beginning to know all of the nurses as they rotated through shifts. It was the first male nurse we’d had and he was so full of energy he practically bounced into the room. He wore scrubs with Disney characters on them like every other nurse on the ward. His were SpongeBob and I wished Rori would open her eyes to see them. She’d just recently been turned on to SpongeBob and thought the show was hilarious. We could never get her to switch shows even though David and I found everything about it annoying.
“The genetics team is going to be here at 4,” he said checking her vital signs.
I was surprised they were coming so late because the majority of the face to face time with the doctors was in the morning. We had yet to see a doctor after the early afternoon. I didn’t know if it was a good sign or a bad one.
I had expected the entire team of geneticists to be at the meeting and was surprised when Dr. Wilcox walked into the room alone. Dr. Koven wasn’t with him either which I thought was odd. He had a folder tucked underneath his arm.
“How are you guys doing today?” he asked.
Everyone always asked the question and I still had no idea how to answer it.
“We’re okay,” David responded. I liked that he’d started referring to us as a “we” again.
Dr. Wilcox pulled out the stool from underneath the computer table where they made entries about Rori and wheeled it over in front of us. He took a seat. “There’s not an easy way to have this conversation today, so I’m just going to get started.”
David gripped my hand. I squeezed tightly back.
“I’m fairly certain we’ve narrowed down a diagnosis for what’s going on with Aurora. We’ve gotten all of the blood tests back from the labs. Both yours and hers. In addition, we’ve been able to take a look at the ultrasound pictures they completed yesterday. It looks like your daughter is suffering from a very rare genetic condition known as Autosomal Recessive Polycystic Kidney Disease. All of her blood tests were consistent for what we could expect to see in a kid with autosomal recessive PKD. That was why we ordered the ultrasounds yesterday. We wanted to look at her kidneys and her liver. We found numerous cysts on her kidneys and she’s begun to develop cysts on her liver too. Again, this is exactly what we would expect to see in someone with autosomal recessive PKD.”
I breathed a sigh of relief. We finally had a diagnosis. At least we knew what was wrong with her and could start to treat the disorder rather than her symptoms alone. I wondered how long it would be before she started to get better. I was ready to attack the problem as quickly as possible so all of us could start feeling better.
“How did she get it?” David asked.
“It’s a genetic disorder. One that’s inherited from both sets of parents.”
“But I don’t understand.” David looked puzzled.
“Genetic disorders are tricky. Every person carries their own unique blueprint of genes. All of us are carriers for various types of disorders. However, most of the time, they never manifest because only one parent carries the gene. It’s only in those cases where both parents are carriers of the gene that a child will develop the disorder,” Dr. Wilcox said.
“Yes, I get that. I understand what you’re saying. We had genetic testing when we were trying to get pregnant and Dr. Keene explained all of that to us, but he told us we didn’t have anything that would create a disorder in any of our children.” David’s head was cocked to the side, eying Dr. Wilcox quizzically.
“Yes, I know you had the genetic testing. We spoke with Dr. Keene and reviewed all of your charts. Maybe you remember Dr. Keene telling you that your wife was a carrier for this? I see a notation in the chart in which he explained to you that Celeste was a carrier for autosomal recessive PKD. Do you remember that conversation?”
I did. I remembered that conversation and panic seized me.
Oh my God. This can’t be happening.
I shook my head pretending as if I didn’t remember the conversation. I w
anted to say something to divert the discussion, anything to derail what was about to happen, but I couldn’t find my voice.
“I remember he said something about Celeste being a carrier, but he said it wasn’t possible to pass it on to our children unless I was a carrier and I don’t have the gene.” David still looked lost.
Dr. Wilcox looked David directly in the eye. “Dr. Keene was correct. There is no way to pass the disorder on unless both biological parents carry the gene.”
“I don’t get. It doesn’t make sense. How is that even possible then?”
My chest tightened. I couldn’t breathe. I was going to throw up and have diarrhea all at the same time. I stared at the bathroom door wondering if I should sprint to the toilet, but in addition to not being able to talk, I also couldn’t move. I was rooted to my spot as the world swirled around me.
This time Dr. Wilcox placed his hand gently on David’s knee and repeated, “There is no way to pass this disorder on unless both biological parents carry the gene.” His gaze was unwavering. I turned to David and saw it happening. The reality registered as the blood drained out of his face, rendering him completely white.
As if he was a robot, he repeated in a mechanical voice devoid of all emotion, “Unless both biological parents carry the gene. I don’t carry the gene.”
My thoughts couldn’t translate into language. My brain was on fire. The two of them continued the conversation next to me, but I couldn’t hear them. The sound had been turned off in the room. The walls were breathing—inhaling and exhaling around me.
Dr. Wilcox stood up, startling me back into my body, crashing me into my seat. “I’m sorry. I wish there was a way to make this less difficult, but there isn’t. Don’t say I didn’t warn you. I get off at six if you wanna meet me for a beer.”
I wasn’t included in the invitation.
“It’s about to get even more uncomfortable in here.” David still looked as if he was in a trance. He was staring into Dr. Wilcox’s eyes not blinking. “In order to make sure our diagnosis is one hundred percent accurate, we have to do a blood draw on the biological father to be certain. Also, given the level of Aurora’s condition and how fast she’s deteriorating, she’s most likely going to need a kidney transplant. Since you and Celeste aren’t compatible kidney donors, we’ll want to run his blood type because there’s a significant chance he’ll be a match and we like to try to match donors with family members.” Dr. Wilcox shifted his gaze to me for the first time, searching for answers
When It All Falls Apart (Book One) Page 7